Help needed: Send messages to Hungarian pwME for my ME Awareness Day project

There is a "too long, didn't read" version at the end.

So my problem is the same as last year: I wanted to write an article for ME Awareness Day based on how pwME in Hungary are affected by the disease, how healthcare, social services etc treat them, how this affects their family and social life and so on. But just like last year, people really liked the idea but no one wanted to actually share their own personal experiences. There is a lot of general apathy here about advocacy projects (and the same is true for long covid - they have absolutely zero advocacy).

Last year luckily a journalist did an interview with me about the disease for ME Awareness Day and I hoped that it may give motivation to some people but unfortunately it didn't.

But I still would like to have a special article for ME Awareness Day and I thought maybe you could help me. I thought I would just turn the whole idea around and instead of trying to make them speak, I would ask the members of S4ME to send a few words to them.

It can be literally anything, from something about having to deal with the disease to what you think the future for ME/CFS will look like to your personal experience or talking about how much BPSers and PACE hurt the situation of the disease. Or just a few encouraging words. Or how much you are looking forward to DecodeME. Really, anything.

Many of my group members speak English but many don't. Many are not really aware of the situation of ME/CFS abroad, that there are actual patient organizations and many advocates fighting for the disease, that you can find doctors/researchers who not only believe you but even understand what the hell you are talking about. I know that even abroad these things are rare, but here in Hungary, this sounds like pure science fiction.

Also, due to the total absence of medicine in this subject here, many patients are deeply buried in alternative medicine and have lost their trust not only in healthcare, but due to all the BPS stuff, also in research.

Some people have read a lot in English about it but many know very little about the disease due to their lack of English and only know about these things because I write about them. And I think it would also be great for them to actually hear something that is personally sent to them, coming from people where advocacy is much stronger and some things actually happen or where there are people who are not shy to talk about the disease.

TLDR

- I need short (a couple of sentences at most) messages from you that I'll post in an article to Hungarian patients on ME Awareness Day

- topics: anything - your personal experiences, encouraging words, advocacy, science, whatever you think would be important

- please state what information I can add about you - for example: full or given name or anonymous, gender, country, severity level, whether you are a patient or an advocate etc - you choose which one you would like to share and it is perfectly fine if you don't want to

Thank you!

 

I would like to invite Hungarian patients and professionals from relevant fields to join the global movement that aims to make lives better for ME/CFS patients and their families. We want to better understand what this illness is, develop diagnostic tests and find effective treatments.

 

This is my message Wyva, hope the project goes well.

To patients with ME/CFS in Hungary: You are not alone, we are with you, there are many Drs & Scientists around the world working with/for us to find the cause & treatments. I know it is very hard, but please hang on, there is hope.
In Solidarity, from JemPD - Severe ME sufferer from UK

 

Thank you, these are great!

I'm still looking for more, so bumping the thread up.

 

To fellow ME/CFS sufferers in Hungary. I'm so sorry that we're all having to cope with this awful disease. But I have more optimism now than at any time since my diagnosis that competent scientists are researching our condition. There is room for hope! From Florence, diagnosed with ME/CFS twenty years ago, living in UK.

 

Excellent idea @Wyva , good luck with your project:

Warm greetings to people with ME/CFS, their families and friends, in Hungary.
Before the pandemic, I was a participant for the U.K. ME/CFS Biobank, which provides blood samples for international biomedical studies into ME/CFS. I have seen some studies written up and often wondered whether one of my samples was used and may have helped in some tiny way.
The Researchers are working hard and I am more hopeful now of a breakthrough.
It’s ME Linda - Moderate M.E. since 2013

 

@Wyva, do you have a time scale? I want to contribute, but have had a busy week, visit to the optician’s and a new electric metre fitted today, so may need a few days to reclaim my brain.

 

I don't really have a definite time scale yet. I can translate these bit by bit, gradually, so if someone shares their message a bit later, it is fine too, it won't be too much extra work probably.

I think I'll stop accepting new messages for this project at some point but I'm sure it will be only a few days before the 12th May. So next week is fine!

 

Just a quick reminder that this project is still accepting messages this week.

 

I could post on Twitter if you like, asking for messages? This might not be ideal though as then you would need to keep an eye on the Twitter thread and the replies there.

 

From me:

Hello from Kitty in the middle of England. I have had ME since 1976, so it has been a long journey, but I am very excited about the new study into the genetics of ME. Medical researchers are working directly with patients, and hope to receive DNA from 20,000 British ME sufferers to look for answers. There are good scientists in many countries studying ME, so I know we will reach our destination one day!

 

Thanks Andy. Unfortunately I don't have Twitter (it is not so popular here) and Twitter seems to restrict access for unregistered visitors (usually I can only view a few things). Also, it's better not to have too many messages for both my and the readers' sake and I think the ones here will be probably enough. So I think it is not necessary but thank you for the offer.

 

Wonderful idea, @Wyva! I hope you will soon see lots of ripple effects from the important advocacy you're doing

 

In case you need some more (message intended to indirectly encourage some more people to join you in your advocacy so you don't have to do so much yourself).

Hello to everyone affected by ME in Hungary. Many years ago I had the pleasure of visiting your beautiful country. Since then I have developed severe ME and travel is now unthinkable. To keep my hope and spirits up I get together with other people with ME online. I can only work a few minutes at a time but together we advocate for better training of doctors, for better support for people living with ME and for more and better research - and I feel we're making a difference. Maybe, one day, I may even be able to travel again. I'll put Hungary on the destination list.

 

Thank you for all the wonderful messages so far, they are great and very useful. For those who still may be planning to write a similar message: I can still accept messages today and tomorrow, but starting from Monday I won't accept more. So if they would like to write one, today or tomorrow is still OK for that.

 

Greetings to all Hungarian people with ME/CFS. My name is Andy, I am someone with ME/CFS and also a member of the management team for DecodeME, the world's largest genetic ME/CFS study. All of the DecodeME team understand how devastating this disease is and are working as hard, and as quickly, as possible to discover whether genetics plays a part in ME/CFS. We hope that the results of our study will help us understand this disease and will lead to treatments for every patient worldwide.

 

@Wyva, I hope this is not too long, and unfortunately the more I tried to keep my English clear and simple the worse it got. I won’t mind if you don’t want to use it:

Fellow ME sufferers in Hungary, greetings.

I developed ME some thirty years ago following an Epstein Barr Virus infection (glandular fever). For a number of years I struggled to continue working full time, but eventually had to go half time. For some four years this worked really well and my health improved significantly. However I had a bad dose of influenza which triggered a major relapse leaving me bedbound for several years. I then gradually improved but since have had a number of ups and downs, with each new down a bit worse than the previous one and involving new symptoms. After a number of years bedbound again now I am able to get out to socialise maybe once or twice a month.

I regret not having understood sooner that there would be no effective treatment for ME, unless things change, and that I would need to adapt to the restrictions placed on my by ME for the foreseeable future. Not only does this mean pacing myself, but also, though making the most of any periods of improvement, avoiding taking on commitments that are difficult to drop if/when my health deteriorates again.

As well as the fact, given there are no current treatments for ME, most of us will have to live with the condition for the rest of their lives, I wish I had been told sooner about post exertional malaise (PEM), potential food intolerances, possible hypersensitivities to sound, light and smell and orthostatic intolerance. This would have helped me to sooner understand the variation in my condition and plan my activity better. On-line patient forums have perhaps taught me more about managing my ME than the medical professionals, not matter how supportive they have tried to be.


ME has not been all bad for me. Not being tied to working in a city has made easier for me to live in the country side and also during the good spells to spend a lot more time with my godchildren in various countries than I would have if working full time.


Peter

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